Monthly Archives: May 2014

As a kid, it seemed everyone I knew had great stories and memories about summer camp. I remember seeing television shows and movies, such as Salute Your Shorts and Heavyweights that highlighted the friendships, activities and adventures that come with summer camps. It’s no surprise that, just as it seemed for everyone else, I couldn’t wait to go to camp. Fortunately, I did go one year– to some camp in Virginia after my third-grade year. I loved it. As I expected and hoped, I made new friends, found adventures and spent many a night with my fellow campers scheming to pull the ultimate prank on our camp leaders. But I’ve realized that, if the camp had more kids with disabilities there, it would have made a much bigger impact on my life.

(Photo Credit: University of Montana Wilderness Institute)

I have cerebral palsy and remember being the only camper there with a (visible) disability. While everyone at camp was super nice and I always felt included, it would have been great to have seen and interacted with other kids who were “similar” to me. There’s a social aspect to having a disability that, unsurprisingly, only those with disabilities can relate to. No matter how kind the world is (and trust me, that means a lot), it means so much to connect with others who, at least somewhat, can relate to my daily experiences and see life through a lens similar to mine. As I think back to the rides, races, water games and other various activities that I loved at camp, I know I would have enjoyed them even more if I was around more kids of all abilities. I am fortunate to now have this type of interaction on a daily basis– professionally here at UCP and personally through social media and events– but experiencing this at such a younger age would have meant so much more.

One of our UCP affiliates, UCP of Delaware, has been running inclusive camps since the 1990s. A few weeks ago, they held a seminar on camp inclusion that I had the pleasure of attending. It was open to families of individuals with and without disabilities, as well as other local agencies and camps. Inclusion, of course, was highlighted and attendees discussed the perceived barriers to operating inclusive camps. While these barriers were addressed and it was powerful (as always) to hear experiences and stories from others, it was nice to learn more about the impact inclusive camps have on those without disabilities. As I and others with disabilities talked about the impacts inclusion has had and continues to have on our lives, many stories about kids without disabilities and how they enjoy interacting with peers with disabilities were shared. Camp directors and family members talked about times when kids would flock to their peers using wheelchairs to get to know them and children with disabilities and their siblings would enjoy their time away from home with one another. It is an exposure that is so impactful at a younger age– and one that teaches patience and an understanding of how everyone has different challenges.

Below outlines some of the major takeaways from UCP of Delaware’s event:

Families and caregivers of children with disabilities:

Want their children to be and feel included

Want their children to enjoy friendships

Like inclusion because siblings can be together

Like inclusion because it gives camp that “family” feel

Former campers with disabilities explained that camp helped with:

Gaining lifelong friends

Challenging one’s self

Expressing one’s self

Building self-esteem

Getting out of the house!

Some tips to help make camp activities more inclusive:

Pair campers up– kids without disabilities can help explain directions and assist with physical activities for kids who may have difficulty doing them on their own;

Offer a wide range of activities so that can campers can pick the activities they feel most comfortable doing;

Communicate with the campers and their parents– what are their likes and dislikes?

Promote teamwork– delegate roles to each team member so that everyone feels included and important.

Free ways to become more inclusive:

Volunteers

College internship programs

Donations from local community service organizations

Finding adapted recreational equipment from other agencies

Getting the word out:

Word of mouth! The disability community is small but vocal

Letting local disability organizations know you are a resource

List yourself as “disability friendly” in annual summer camp lists

I thank Bill McCool, Executive Director, Lilia Melikechi, Research Intern and everyone else involved at UCP of Delaware for hosting and allowing me to attend this seminar. If you have any questions or would like to learn more about inclusive camps, please feel free to contact Lilia Melikechi at liliam@udel.edu or (302) 943-7214. Or you can contact UCP of Delaware at ucpde@ucpde.org or (302) 764-2400.

A hot topic in the world of disabilities has been heating up. More and more stories of families pushing for accessible playgrounds continue to pop up on the Internet and in the news. The push for accessible playgrounds is gaining a lot of momentum– and rightfully so. Children of all abilities (and also parents and caregivers of all abilities!) should be able to access and enjoy playgrounds. We all want to have fun, meet new friends and swing, slide and ride the afternoon away. So we should not let routes and surfaces, among other factors, get in the way.

I was fortunate to see this firsthand at an event near Philadelphia, Pennsylvania last month. I am a big fan and follower of Chasing Rainbows, a blog run by Kate Leong, who is among the many inspiring parents and caregivers connecting and sharing ideas with one another online. For more than six years, Leong has been sharing her family’s stories with the world, including those about her first son, Gavin, who had cerebral palsy. Last year, at the age of five, Gavin died very unexpectedly– and earlier this month, Leong arranged a tremendous fundraiser, Gavin’s Playground Project, in his honor. Commemorating the one-year anniversary of her son’s passing, she held this event to help build an accessible playground at the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware. “Their current playground is wonderful, but it isn’t accessible. I remember the first time I wheeled Gavin out there in his chair with his little brother. I wanted to cry when I realized that there wasn’t a single thing that Gavin could do. And I had to stop short of the equipment because I couldn’t push his chair over the mulch,” Leong explained. “My goal is to fully fund a playground there where ALL kids can play…where NO child will ever feel left out…and where everyone can play safely together.”

Gavin’s Playground Project event was a huge success– and that is an understatement. Filled with a trivia game, silent auction, raffles and tons of inspiration, the event had more than 400 participants and raised roughly $60,000! It was incredible seeing so many people supporting such a great cause, led by one busy mother whose determination helped make it happen with only two months worth of planning. Leong is a prime example of the huge impact parents and caregivers of children with a range of disabilities can have. A real difference can be made and I am excited to continue seeing our push for accessible playgrounds grow.

For more information, check out “Playgrounds for ALL Kids!” by Cindy Burkhour. A huge advocate for the rights of people of all abilities, Burkhour has consulted all over the country to help ensure parks and other recreational programs and activities are accessible to individuals with disabilities.

It was March of 2009 and my daughter, Naomi, had made it to full term with no issues. However, unbeknownst to the doctors and me, she had an in utero stroke at seven months gestation. She was born having multiple seizures per hour and was not expected to survive. When she was three days old, a magnetic resonance imaging (MRI) scan showed severe brain damage and I was told she might not have a high quality of life if she even survived. However, I believe there was another plan for Naomi. She did survive and is living with a quality of life much different than what the MRI suggested.

Now at five years old and diagnosed with mild cerebral palsy, Naomi has only mild delays in development and is thriving. She walks with the assistance of an ankle-foot orthosis (AFO), speaks (quite lively, I might add) and is sharp as a whip. She continues to astound her occupational, physical and speech therapists– as well as our entire family!

As an outlet from Naomi’s unforeseen event at birth, I decided to write a children’s book, titled “I See You, Little Naomi,” with the goal of educating children and the public about the existence of pediatric stroke. More importantly, I wanted to teach children about people with special needs. I wanted to instill understanding through this book because, with understanding and knowledge, there is compassion. If there is any way Naomi’s testimony can lessen fears or misguided assumptions and give hope to other people who may go through similar trials, then my goal is accomplished. Making it through this life’s trial has resulted in a spiritual, mental and emotional metamorphosis in so many positive ways for me and my family. My hope is that her story, with the challenges and triumphs, may do the same for others.

It is a difficult trial for any parent to see his or her child go through a medically traumatic event or born with a medical complication. My family and I were introduced to the world of special needs where there are many appointments, documents to sign, meetings to attend, and various activities and schools to carefully consider. After navigating through these challenging times with my daughter, I have become inspired to acquire my cosmetology license. I would like to have my own salon and be a mobile cosmetologist. My daughter’s triumphs have become her testimony and anchored my passion to give back to others. Making hair appointments takes a lot of time and attention and I believe mobile cosmetologists can be a huge help to other families in situations similar to mine. I will graduate from beauty school in May of 2014, which coincidentally is Pediatric Stroke Awareness Month. I will proudly wear my purple ribbon to help spread awareness for pediatric stroke, as I and many others who have experienced pediatric stroke in their families have much to celebrate– the strength of our young survivors!

Naomi will enter kindergarten soon. With the strong-minded, determined and brave character she has shown so far, my family and I know that she will continue to deepen our love and faith in the best to occur. She has shown us that, regardless of any challenges to come, we must never give up. Naomi is a survivor that continues to defy the odds—and for this, we are forever inspired.

Originally appeared as a featured story on Daddies Board Shop, Inc.’s website on January 29, 2014.

Whether you were born with a disability or received it after an injury, it should never prevent you from enjoying life and the excitement of sports. Sports don’t just benefit your health; those who participate on a team, or individual sports, experience better self-esteem, and when a survey was completed for those who participated in Disabled Sports USA programs, the results were astounding. Simply being a part of something may give you a better chance of staying physically active, feeling more fulfilled, socializing more, and create a more positive outlook on life. With the constant advances in technology and equipment, there are many opportunities for those with disabilities to get involved with sports, including snowboarding, skiing, sled hockey, and many more.

Adaptive Sports for Those with Disabilities

From soccer and basketball to more extreme sports, like snowboarding, skiing, and dirt biking, there is something to fit everyone’s style. You don’t have to climb up the cliff of a steep mountain, although it is possible, in order to enjoy adaptive sports. Some like more calming low-risk sports, while others starve for the thrill of adventure. Whether it is a risky sport or not, competing will get your blood-pumping as you attain new goals, score points, and battle for the win. One of the most popular places to compete at is The Special Olympics. Having been around for more than 40 years, it has now grown to offer over 32 individual and team sports. The joy teens and adults experience from achieving goals while doing what they love is what the Olympics is all about.

There are hundreds of people on snowy mountains around the world who enjoy snowboarding, despite having a disability. As the equipment and experience improve, it continues to grow in popularity and can be done on modified equipment, but the same elements of cruising down the hill remain. In many ways, it involves more technique and strength; and you better believe pipelines, jumps, and shredders are still a piece of the fun. Snowboarding is still in the beginning stages, but is a great way to put test your limits while enjoying the outdoors.

Adaptive skiing reaches a range of disabilities, making it possible for thousands to experience the rush of swooshing gently down a hill. Skiing is great for those looking to try new things in a safe way. With many styles and equipment, you can easily balance yourself to safely get down the hill. The first method of skiing is called four-track skiing. It works great for people with Spina Bifida, Cerebral Palsy, or double amputees. The four skis give support and balance, but also the ability to control, maneuver and turn. Three-track skiing is usually used for those with a single amputee. Their leg is in the ski with two side skis anchored down for balance. Mon-Skiing is a sled-like chair with a single ski underneath it. The skier uses their core strength to control turning. If you enjoy gliding and working your way across snow, but aren’t a big fan of soaring down hills, cross-country skiing is a great fit. Using the type of ski system that works for you, you use poles and strength to cruise above the snow.

If you have never heard of sled hockey before, it might sound a little strange; the game is just as fun and competitive as hockey, but instead of skies it is played on sleds. The sled is built to hold the legs in place while the body sits in a bucket seat. Those with double-amputees will have a shorter sled, giving them quicker-shorter turns. Another big difference is the sticks. Instead of one stick, everybody has two. Both sticks have a metal pick on the heel to help propel them across the ice.

There are many sports to keep you entertained and in shape every season of the year. Whether it is in an indoor gym or outside on the street, wheelchair basketball is a fun way to enjoy your favorite game while getting cardio exercise. In the summer, make a splash with adaptive water-skiing, wakeboarding, sailing, or jet skiing. If you enjoy extreme sports like snowboarding, then you might want to try your hand at dirt biking or four wheeling. With a little research, you can find organizations, classes, and teams in your area so you can get involved in the game you love.